The ME/CFS Ghost

Living with a chronic illness like ME/CFS can make you feel, not to mention look, like an extra from a horror movie. There are days when I'm a ghost haunting the house, or times when I'm a zombie shuffling along. This is my life with ME/CFS.

Thursday, 1 May 2014

I've had a Twitter account for a while, but haven’t seriously used
it.However, yesterday I spent my first
full day checking my account and monitoring tweets and this is what I
discovered:

Platitudes Really Annoy Me.

One of the accounts I follow posts platitudes about how great things are,
positive quotes and is all about the silver lining. I’d seen them before, but to see her send a
new one every few minutes, I was impressed.
Well, by the end of the day I was impressed. I started off the morning thinking “Awww, that’s
nice”. By lunchtime I was a bit fed up
of having my feed jammed with so many uninteresting tweets. By late afternoon I was sick of the fluffy,
well-intentioned nonsense and even went to the person’s profile with every
intention of unfollowing them. But then
I remembered why I had started to follow her in the first place and so I didn't hit
the button. Now, it is evening and all
cynicism aside, I am seriously impressed.
That account tweets every few minutes all day, every day
–impressive. Even more impressive? Who knew there were that many platitudes in
the world and so far I haven’t seen a single one repeated. Also, every now and then they’re broken up by
a beautiful calming image of a waterfall or some other peaceful landscape or a
message of gratitude and thankfulness. This really isn't my kind of thing, but as there are 55,000 people following that account, there sure are a lot of people who enjoy it, so more power to them.

How Quickly You Learn Breaking News.

I found out Bob Hoskins had died even before any of the news
sites, like the BBC had a chance to tweet about it or before any one of my
Facebook friends had time to post one of those typical “Bob Hoskins Dead. So
sad. RIP” messages. This is truly
astonishing for someone like me (the finding out so soon part...although Hoskins' death was very sad news). When Nelson Mandela died I found
out when I visited my sister and found a newspaper with a front page article
about his funeral. The newspaper was
four days old. If my sister had had her
recycling pick up before that visit, I may have been oblivious to that news
even now.

How Amusing and Bewildering the Topics which Trend Can Be

As the news about Bob Hoskins broke, of course his name shot
to the top of the ‘Trends’ list, but it was closely followed by ‘Who Framed
Roger Rabbit’. Seriously? It was a good hour before 'The Long Good
Friday' showed up and I’m still waiting for 'Mona Lisa'. I love Bob Hoskins but can't say I ever thought
much of that bloody Roger Rabbit movie! Anyway, I always preferred
his normal accent than to a put on American one.

People Will Keep Tweeting About Nigel Farage and UKIP…

…even when they’re complaining about how much attention and
coverage these two topics are garnering.
I believe that is a little thing we call irony out these ways.

It Can Be Quite Fun and Easy To Do!

I don’t know if I have it in me to be on Twitter all the
time, not even just observing others, but I did enjoy it and found it is much
easier to do than I had ever anticipated.
But I also realised that I am not ready to use Twitter via my
phone. I used the app for a few seconds
before I had a full on panic attack because I was getting notifications and
couldn't figure out how to sign out of it.
I calmed down and did manage to do just that and I think it may be a
while before I venture back to Twitter via my phone.

Wednesday, 30 April 2014

Yesterday was a bad day…a very bad. It started off quite well, but by the time I
got into bed yesterday evening I was physically, mentally and emotionally
exhausted. I just felt like I had been
through the washing machine of life and had come out limp and wrung out. So why was it so bad?

Well, I think I overdosed on ME and ME'ers yesterday.Yep, it is possible to do that.I've been absent from the ME scene for much
of the past few months, but I have been writing a book (ME related and more
about that in the future) and as May is almost upon us, I wanted to write more
articles online about ME.Every May I
try to write as many posts as possible to help raise awareness of this illness.

Tuesday, 18 February 2014

Yesterday I took part in a HuffPost Live segment about
Seasonal Affective Disorder (SAD). I
suffer from the Summer Blues, rather than Winter SAD and I wrote an article
about this last year (Melting to Death in the Sun – Life as a Reverse SAD Sufferer). My ME/CFS symptoms have been really bad
lately, thanks to a recent cold and with lots happening in my personal life (I
will be moving house this year – HELP!) so I have to admit that when I received
the invitation from the HuffPost Live segment producer, I really did not want
to do it.

On any given day, I feel much more comfortable with the
written word rather than the spoken. But
my recent brain fog had me worried that I would not be able to keep up with the
conversation let alone reply in a coherent manner. Also, I look and feel so ill, that I didn’t
want to be seen on a video. So I was all
set to say “Thanks, but no thanks” but I thought about the reasons I wrote
about SAD and it was for the same reasons I write about ME/CFS; to raise
awareness and help sufferers know they are not alone. So I agreed to do it.

The segment had not been on for long before I realised that
I was probably the worst example they could have picked as a Summer SAD
sufferer, because I also suffer from ME.
The two complicate each other and I would not have the same options
available to me as a standard SAD sufferer.
The doctor who took part in the segment also made some suggestions about
what Summer SAD sufferers could do, but the painkillers and meds that I take to
help my ME symptoms prevent me from trying these out.

So, in hindsight, I fear I came across as this weird freak
that abhors the sun and doesn’t really try to get any help, when honestly the
complications come about because of my ME.
You can watch the HuffPost Live segment here

Do you have ME/CFS and also suffer from SAD? Do you find that one makes the other worse or
that some of the treatment options are not available to you because of other
meds and symptoms?

Saturday, 9 November 2013

I've just
spent the last half hour feeling ridiculously angry over insensitive comments
from my partner, but that all changed a few minutes ago to real pride over how
much I have changed. My other half has
been on at me to sort out a pile of papers and letters on the dining table. He tidied and file the worst of the mess, so
what is left is mine (or so he claims).
My ire started this morning when he once again pointed out the
pile. Then I received a delivery of
clothes and shoes; as I don’t visit shops, I order everything online, try it on
then return what I don't like or doesn't fit.
Somehow, in the process of doing all that, he’s either gotten in a bad
mood because there was stuff all over the flat (we live in a shoebox) or
because I wasn't working on business planning (my idea) as we were meant to be
doing. When he saw the 2 large bags of
returns he started to interrogate me on when they would be collected and if I
could at least hide them away somewhere.
He is obviously in a shitty mood about something; but I appreciate
stupid, insensitive comments about as much as the next person. Especially as this week has been bad with a visit
to the doctor’s, new meds and around 4hrs sleep each night.

The
realisation that made me feel so much better was this; not only does the pile
of papers on the table not bother me at all, but neither do the dishes in the
kitchen or other household chores that are waiting for me to have a good day. At one time I would have spiraled into deep
depression at not being able to tidy up or killed myself trying to do it. But not now; if I can't do it, I can't do
it. The moody man’s passive aggressive
behaviour annoyed me and his insensitivity, but he’s also has a bad week, and
we’re all allowed an off day. He is not
ignoring my illness or pretending I'm not ill, which may have been the kinds of
thoughts I would have once had as I remembered all the people who actually have
done that to me.

I don't
know exactly when I changed these aspects of myself, but I'm glad I have
because ultimately it makes life easier for me.
There are plenty of genuine hardships and even tragedies when you have
ME, yet in the not so distant past I have been guilty of reacting extremely
badly to things that perhaps are not as important or as serious as I have made
them. I've now started to think about
the more specific things that did bother me but now do not and I think I may
write about those more in depth in the next few posts.

Tuesday, 8 October 2013

Most people
would immediately answer “Never!” when asked if they have been cruel to an ill
person, but the truth is that we have probably all done so at one time or
another and we didn't even know it.I've
been ill for almost twelve years and it was only when I ended up on the
receiving end, did I even stop to think about all the times I may have said and
done something inadvertently cruel to other ill people.

Most chronic
illnesses are invisible. If you look at
my pic, or even look at me, you can't tell that I am ill. This is not just true for ME sufferers as the
same goes for people with Alzheimer's, Cancer, Fibromyalgia, Lupus and dozens
upon dozens of other illnesses. This may
seem like a good thing, but it actually makes life harder for people with an
invisible illness or disability because they not only have to deal with the
symptoms of their illness but with the way people treat them.

Wednesday, 4 September 2013

On Monday night I watched the BBC Inside Out programme on
Sikh girls being groomed by Muslim men.
I don’t watch television, but first one cousin sent me a
message to “Watch BBC 1 now”, then another cousin had posted “Check out Inside
Out on BBC 1 now!!!” as her Facebook status and then my dad called me to tell
me that I should watch it. The contact
from my cousin and father were because they were aware I was concerned about a
Sikh friend’s daughter who is a minor and has been involved with a Muslim boy
and there is cause for concern. So, I
found a repeat of the show online.

I don’t have any doubts that this type of grooming takes
place; whether it is as pervasive as some of the people interviewed in the show
believe, I cannot say. But coming from
the Sikh community, I honestly believe there is much that it can do to help their daughters if they experience this type of grooming and
from even becoming victims of this in the first place.

Saturday, 31 August 2013

Back in April I wrote a post titled Make Money with Bubblews for Doing No More Than You Would on Facebook or a Blog in which I was raving about Bubblews as a way to make money online. I had been a member for one month then and all seemed great. In fact, things were great there until a few weeks ago. I had made about $200 dollars up until that date and not experienced any problems at all with payments. Then, on 5th August I saw that I had reached the minimum needed to redeem payment so I sent my request through. it is now 31st August and I still have not received payment nor have I received any communication from Bubblews. I had heard that they had delayed payments, so I waited, but today I e-mailed them to enquire about the payment. From what I've heard, I'll be lucky to get a response, but I thought I would go through the motions at least. Here I plan to write what I believe the problems are with Bubblews. It may be that you just write me off as a disgruntled user, complaining after not receiving one payment, but I honestly believe there are bigger problems than that.

Wednesday, 14 August 2013

I guess I should start by explaining why at gone 1am I am wondering if juries are more likely to find people guilty just because they are on trial.If you follow my blog, you’ll notice that I've not been posting much for several months and that’s because I have been extremely ill.I've been more ill than I have been in many, many years and even when I was able to write, I didn't feel up to writing about my depressing symptoms.So, I’m going to write about what I've been doing during that time.I usually pick a DVD box set and watch some of my favourite TV series.But after a while, even that wasn't quite hitting the spot, especially as my sleeping pattern has been totally out of whack.I've recently found a new pass time and that is watching episodes of Dateline NBC on youtube.

For those that don’t know of it, it's an American true crime show and has the same formula; through interviews and narration we’re shown the background on a shiny happy family, one of them dies, and then the legal investigation against a suspect is carried out and finally the court case. I've watched so many episodes this past week, but I have to say, I'm seriously starting to wonder if the jury just finds every single person guilty, whether there is the evidence for it or not.

I studied Law for 3 years at college, have been a witness in a customs sting case and have sat on a jury, so the law has always interested me. In fact, I wanted to be a legal journalist once upon a time, until studying the law made me realise that the practice of law has very little to do with guilt or innocence and a lot to do with who can put on the best show in court.

Although I'm not legally allowed to talk about the case I was asked to serve on as a juror, I will say that after that experience, I would have been more inclined to state that jurors are more likely to, initially at least, go for not guilty. I justified this by assuming that people didn't want the burden of finding someone guilty. But my case was nothing like the ones they show on NBC Dateline.

Now I’m wondering if perhaps people think “Murder is a serious crime; they wouldn't charge someone and bring a case against them if they weren't sure.” After all, it’s always so easy on CSI and all the other shows like it. Dexter has almost been caught so many times and that’s even with him covering up from within the legal system. But I watched a couple of Dateline NBC shows today, where even the victim’s families were shocked by the guilty verdicts, and one of them even said “I didn't think they would convict on such little evidence.” Have the legal and crime drama shows that can be found airing all day every day given the average person an unreasonable level of confidence in the police and legal services? Do they think a person must be guilty of something to have come under suspicion in the first place?

If any case shows how wrong this kind of thinking is, it's the murder case of Angie Dodge and the fact that Christopher Tapp, in 1998, was found guilty of that crime and sentenced to 25 years to life in prison. You can actually watch that episode (see the bottom of the page) and see the whole travesty yourself. But the fact is that Christopher Tapp, who was little more than a kid back then, was harassed and cajoled and fed information until he finally confessed to a crime he did not commit and even ended up implicating another man. I could write the whole sordid tale here, but I will let you watch it, all I will say is that this is such a disgusting miscarriage of justice and I wish I could do more to help get him out, as the victim's mother is currently fighting to do.

I have signed a petition and if you also feel so moved after watching the show, or doing some online investigation, please click on the link below.

Monday, 3 June 2013

It has been over a month since I last posted here and that's because I have been very ill but I've still been trying to write, especially as May was ME Awareness month. I wrote a number of posts on Bubblews about ME and living with this illness, and you can find a list of these below. I'd be lying if I said it has been easy; my worsening symptoms have not helped with my mood, but we can but try. I think the most important article I wrote was the one about Karina Hansen and I would urge you to read her story and to sign at least one of the online petitions. You could help to save her life.

Saturday, 27 April 2013

Recently my partner got a Samsung Galaxy Note 10.1 and while I was interested in his new toy, I didn't actually think I would personally get any use out of it. How wrong I was! For starters it is easier and lighter to use when I am lying down, as I found out while I was horizontal with my latest ear infection. But now he has bought an even better treat that has made things even better for me!What he bought is this flexible arm thing which clips onto the back of the bed (the picture below actually doesn't do it much justice) What you can do is clip this onto the back of the bed (or a bed side table) and bend the arm so the tablet hangs above your head. This means that my arms and hands do not ache after a little while, as I no longer need to use them. I can watch videos online and I even played a game like this. Also, because the arm is flexible, I can move to a comfortable position and adjust the position of the tablet to match.The clamp that attaches to the back of the bed is adjustable and extends up to 5cms, and the part that attaches to the tablet is also adjustable and I even used it with the Samsung Galaxy Note in it's tablet case.I wouldn't recommend this if you intend to actually be tapping away at your tablet for an extended time, because your tablet will bob about due to the flexible arm it is attached to. Also, once it is attached to your bed, I would suggest that you leave it attached there, rather than repeated removing and reattaching. But if you're anything like me, this shouldn't be a problem. This is one of those things that is just so simple and inexpensive but makes a world of difference to an ME sufferer like me.

About Me

I've been an ME/CFS sufferer since 2001 and now that I am not as ill as I used to be, I share my experiences in the hope that something I say can bring someone else hope or even just so they can learn from my mistakes.

When I'm not writing about my struggles with ME/CFS, I try to help others via my website and my other writing endeavours. Check them out - I'm seriously not always this grumpy!

Disclaimer:

Please note that I am not a doctor nor do I have any medical training. My purpose is not to diagnose or to treat anyone, and anything said on 'The ME/CFS Ghost' should be taken as my personal opinion rather than as a medical fact. What does or does not work for me and my symptoms may differ for you, so please always consult your doctor before you act or don't act based on something I have said in this blog.